Trying not to obsess

[1980Sport]

Since the neurologist suggested that my ds had the 'look' of a particular condition I've been obsessed with finding out as much as possible about it. I know this isn't healthy and after a couple of weeks of constant googling and scaring the life out of myself I went cold turkey. In the last few days I've found myself slipping back into my bad old ways. So as I sit feeding ds2 I'm posting here instead of trawling the Internet. Is anyone else a 'research addict'?

The FB threads kept me reading last night but it just left me with an equally bad pit of dread in my stomach and feeling rather depressed that there are people out there prepared to defend and even applaud this vile man.

I spend far too much obsessing about my kids who between them have ASD, dyspraxia and severe dyslexia.

And you know what? After a year of obsessing and researching and investing huge amounts of time and energy both of them have made huge improvements. If I hadn't spent all that time researching they never would have made tha progress because the NHS and school have certainly not helped.

Now I am starting to obsess over whether my youngest has ASD as well. It just won't leave my head.

So in a diff situation to you because we had a dx. But would have to say that although last year has been hugely stressful the obsessing was worth it and has paid huge dividends.

Hi indigo I'm glad you've found your research of benefit to your dc! I think I can split mine into two categories - the good stuff like learning new makaton signs, reading about object permanence, cause & effect, new game ideas etc etc and then the bad stuff like endlessly looking up images/video clips of children with this syndrome, constantly reading about the genetics tests! This stuff leaves me feeling a bit desperate! But you're right about the positive side of it I've learnt more in the last few weeks about ot and slt from my own research than the last year from the therapists themselves. Thanks for helping me see that! Sorry to hear you're having concerns about your youngest!

Hello again Sport. I've posted on some of your previous threads.

I will admit to being a research addict too. It also started when a geneticist was almost convinced that my ds had a certain syndrome. What really helped me was contacting the syndrome's foundation in the US (I'm in Australia). I spoke on a number of occasions to a lovely lady who had two sons with the syndrome, she even called me first! Even though we did not have a diagnosis they were really helpful, we still keep in contact now, even after ds has tested negative for this syndrome (which was a bit of a shock to everyone!)

I don't know how rare the syndrome that you are researching is, but the one my ds was thought to have is really quite rare and so most of my searches ended at a pubmed site with the scientific studies. I have not bought myself a subscription yet, but the extracts and summaries are enough to scare me. I do comfort myself with the thought that scientists will naturally study the WORST manifestations of a syndrome.

I can go for weeks without googling, but I only have to start looking for something related to ds's condition, say, low muscle tone and drinking cups, and my googling eye starts to wander.

Right now, as the geneticists have run out of ideas, I tend to google for blogs of families dealing with children who may have the same symptoms as ds. It helps me see how other families work through the problems that they have and also helps me feel not so alone (all of my RL friends have NT kids.) I am secretly hoping that one day I'll stumble on a blog about someone who has the same symptoms as my DS.

I'm a research freak too.. Like indigo lots that I have found has actually helped ds2.
But I have to say that I only research the bits I don't know!
So the hypermobility and dyslexia and irlens I've left alone.. If ds had the same rare genetic syndrome as is in our family .. I wouldn't bother.. Because we live with these things.
But I knew nothing about asd/as or sensory intergtation .. So I want to know everything I can about it, filter out what is relevant to our situation and use it.

It's difficult if you don't have a dx.. Where do you start and stop? And you will naturally focus on the worst cases!
Maybe focus your energy on day to day things instead of scaring yourself!

:)

Hi PJ - it's good your research has helped, how did you feel when the dx was negative - sometimes I feel like I'd rather not know! I feel that I'm wasting my time looking up so much about this syndrome when he might not even have it. Apparently there have been about 350 confirmed cases in the last 40 years and they can make a clinical diagnosis if no genetic factor is present. He has all the symptoms bar one.

Arsenic you are so right about the day to day stuff it makes me feel positive and in control when I do therapy related research but i have an 'oh my god I can't believe this is happening' feeling when I do the genetic googling!

Hi Sport, I was almost disappointed when the dx was negative. You never really want to label your child with a potentially awful condition with a poor prognosis, but having that label would have opened a number of doors for our family, including avenues of support.

I was also a bit upset because ds has a rare metabolic marker in his urine and there are a few identified conditions that have this. The syndrome that ds was tested for was the 'nicest' of them all. He doesn't really fit into any of the other syndromes though, which is good news because through googling I have found them to be truly awful. The geneticist now has ds in the 'unidentified and unnamed' section of this metabolic marker so we have to find our own way really.

Googling has helped in a way because we don't get to see the geneticist often and I have been able to research these other syndromes. We are at the edge of diagnostic medicine and I know more about these conditions than many of the specialists that ds sees at the hospital. Once a consultant asked me to email him the url of a really useful website that I had found and I even told the geneticist of a new test that had been found for the original syndrome that he was going to do a DNA test for!

be really careful with Google, I found it made me really depressed, since giving it up I feel much better.

Yeah fanjo - I'd been feeling great for a few weeks with no googling but the last week or so I've got that pit of dread back. I'd started again because the geneticist had phoned to say first results are due back mid- Jan! How's your dd anyway?

PJ it's really interesting to hear of your experiences. It's such a horrendous time all of this waiting and testing while trying just to get on with life too!

DD is fine thanks, loving nursery and speaking a bit.

I have finally got to a place where I just love and appreciate her for who she is rather than worrying about the future and trying to 'fix' her which is easier.

oh yes-in the early days i was terribly obsessed.
didnt have a computor though-it was libary books for me.

getting a diagnosis was a double edged sword for me-on one hand it helped as my daughter got the help she needed[after a fight]
but on the other hand-a diagnosis has been the bane of my life!!

aswell-i think that[possibly]the reason i was so obsessed was because i felt a lot of guilt-i felt it was my fault that she was the way she was-
id brought her up in a very calm and relaxed
home and i thought this was the reason she was the way she was!
looking back-this is ridiculas but i guess a parent thinks all sorts when things dont seem right eh!

nowdays-although she has a diagnosis[more than one]in this-i see her as a individual aswell-yes-she has the same/simmilar traits of other children with her diagnoses-but in this-she s her own person!

Fanjo - glad dd is feeling better!

Sparky - I often feel the same in that I didn't do enough to encourage ds in the first few months which has led to his development problems not helped by mother who regularly tells me I didn't do enough - she said I let him sleep too much but then complained when I woke him with the 'you should never wake a sleeping baby' phrase. I know this is irrational but you can't help think what if I'd done this differently! I have such mixed emotions about a dx but I suppose we'll wait and see what 2011 brings! Thanks for responding x

It can get quite obsessive with the research bit. I have a friend who is a dr and has that professional thing of never seemingly disagreeing with another professional. So when i find something that contradicts what i have been told i show it to him. lo and behold a day or so later he finds some info that supports my opinion and says to me to have a read. several times me and one of his paediatricians have had to 'agree to disagree' because they can't/won't change their opinion - but can't/won't say i'm right/valid as i'm 'just a mum'.
What is that new expression 'the pentium is mightier than the sword'

I think I should be banned from the internet-I don't do anything constructive but can spend hours reading blogs of other parents with CP kids, and inevitably comparing them to my DS which isn't healthy. Although on the other hand it is nice to read about other people facing the same challenges and some of them with older kids do make me at least see that the future is not necessarily so bad as I sometimes fear.

I hope you get some answers in Jan!

1980-oh you know what-
we could all send ourselves nuts worrying what we could of done/didnt do/did do/did too much ect but at the end of the day-what is is-its no ones fault is it[sn]!
also-for some strange reason[ive learnt]
when it comes to sn-others seem to think its alright to judge us/blame us[sometimes]
or give us unwanted advice-it just seems to come with the terrotry.[ive met kindness aswell-all swings and roundabouts]

a classic has been"youre child needs a smack-
that will make her behave"!!
hmmm-yep-its always good to smack someone who doesnt understand isnt it!

fwiw-i have adult children aswell-
they are very close together in age and it was often rowdy-and one of my daughters has
a seriuos mh condition-
see-cant winit dont matter what we do-
as i said-what is is!

im sure that in time you wont be feeling like this[im not anymore]
we just gotta do our best and thats all we can do!
good luck 1980!

Thanx sparky